Today Connor got his dose of Solumedrol & Methotrexate. He woke up this morning feeling pain everywhere but after we thought about it we figured it was him just feeling sore after the PT he had yesterday plus his new favorite past time moving around in his wheel chair. So even if he just pushes a little it is still more exercises then he had in a long time.
He did have one more 30 min session this morning and had fun. This is what I love about this Hospital, they make it really fun for the kids in rehab and they do not push but watch carefully and listen when Connor says he is tired.
Today was difficult for me and I figured out why. In Chicago we lived in kind of a bubble because all we focused on was Connor getting the treatment he needed and we were glad that the four of us were able to stay together.
Coming back to Colorado was very emotional but also threw us back into reality really fast.
For one, we are now separated in teams of two so one of us can stay with Connor and the other takes care of Alexander and our responsibilities at home.
Some of you will have read my post on FB... and here is why I came to this point...
We are one of the 'lucky' ones to have insurance. However since it is 80/20 it might be easy to figure out what 20% can mean when you look at the Doctor visits, tests, and treatments that Connor has been going through, plus him being admitted to a Hospital going on four weeks now.
It is ironical that one of my passions has been the Health Care System or lack of it and how it impacts Middle Class and now we are actually living the nightmare.
We are NOT complaining now but we are faced with some tough decisions and we will have to make some big adjustments to our lifestyle very soon. We are faced with a lot of bills and more to come. This will not stop us of our mission to get Connor the care he deserves and to put the focus where it needs to be... on the four of us to get through this.
For one Ron has to go back to flying which leaves us trying to take care of one son being in Rehabilitation 106 miles away from our other son at home.
My parents will try to come here as soon as they can manage but they have medical issues themselves so have to take care of their Doctor visits before coming to the US.
One of our worries right now have been our lovely and precious dogs, Tasha, Apple and Hexe. For one we will not be home on a constant basis and we can not afford to board them at this point. We do not want to loose them so have to find a solution until Connor gets released and can get therapy as an outpatient. I hope you all realize we are not heartless debating this right now but that in fact they are family and we need to come to a solution that will be kind to them as well. My brain is truly not fully functioning right now because I know there is a way to handle this and this is why I am relying on our friends to throw ideas our way.
We might get lucky and on Tuesday get a tentative date for how long Connor needs to be admitted. They really stressed the word 'tentative' because it all depends how PT and OT feel about Connor's progress over the next few weeks I guess.
We did have a visit from Dr. Soep and she talked to us about Connor's blood levels. She has been wonderful in every way and told us that she communicates with Dr. Curran and Dr. Pachman. She did get an e-mail from both of them and there might be an adjustment to Connor's medications next week since some levels are still to high and are not coming down as they had hoped so depending what Mondays Levels look like his doses will be increased.
Also somewhat good news is that our Insurance agreed to Connor's move to the 6th floors Rehabilitation Center. So we moved once again and Connor was upset at first but is now hoping they might offer Orange Cream Popsicles on that floor which is a new passion of his. Our new room is 621 and feel free to visit just remember no kids under 12 are allowed to the rooms.
Now since time has passed from when I first started to write this message this morning I have to tell you how you all have showed me once again what amazing friends we have and when I seem overwhelmed you start trying to problem solve, send ideas and offer help. THANK YOU, DANKESCHOEN, GRACIA'S :):):)
Also, there are as always a lot of people to thank today and I want to Highlight the Gallup Family for driving all the way to our house to pick up Alexander, giving him a much needed outlet and play-date, feeding him and then driving him home again. I know my husband was grateful and I can only imagine what it meant for Alexander!!!
And I have not been home yet but from what I gather the Welcome my husband and son had must have been amazing. I heard there was food in the refrigerator, Dinners, Flowers, Wine, cookies and treats and a clean and dust free house after it sat there for over 3 weeks. Maybe I forgot something but then I have not been there yet... however this was all Thanks to the Gallup Family, Simpson Family, Shelly, Clare and Ann...... True Angels!!!!
So you see I promised when I started this blog that I will always be raw and honest with what is on my mind. You will get to hear the good and the bad and the ugly but this is what this journey is to us ... ups and downs but never ever will we accept defeat :)
Hugs,
R A C A
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